The Parent Carer Research Network brings together parents & carers with academic researchers. Working together, we enable high quality mental health research that meets the diverse needs of children, young people, parents, carers and families.

This privacy notice explains how we use the personal data we collect from you when you apply to partner your research or involvement activity with the network.

The Parent Carer Research Network is a partnership between the Charlie Waller Trust, the University of Birmingham and the University of Oxford. For the collection of personal data from researchers we adhere to the policies and procedures of the University of Oxford.

What data do we collect?

We may collect the following data – personal identification information such as:

• Name, email address, role, and institution/organisation of the lead researcher applying to partner with the network
• Names and roles of other researchers involved in a research team applying to partner with the network.

Any data you collect through a research or involvement activity you have recruited for using the Parent Carer Research Network, other than the data listed above, is your responsibility, and the Parent Carer Research Network holds no liability for this.

How do we collect your data?

Your data may be collected by us in the following ways; via:

• Our expression of interest and application forms for researchers
• A personal communication to the network e.g. an email or conversation
• Our network survey for researchers.

How will we use your data?

We may use your data to get in touch with you via email, phone or videoconferencing:

• About partnering with the network and during the application process
• To confirm the outcome to your application for partnering with the network,
  discuss any next steps, and provide network resources such as our logo and
  requirements around acknowledgements and reporting if successful
• To provide partner support including sharing amendments to network policies
• To request information through our network survey for researchers about:
  parents and carers who have engaged with your research via the network, any reflections on benefits for parents and carers, the impact and outcomes of the research, and the researcher reflections on being part of the network.

Who has access to your data?

Access to your data within the Parent Carer Research Network will be provided to
those who need to view it as part of their work in carrying out the purposes
described above. This will include staff members at the Charlie Waller Trust,
University of Birmingham, and the University of Oxford.

Third party processors are required to take appropriate security measures to protect your data in line with our policies. We do not allow them to use your data for their own purposes. We permit them to process your data only for specified purposes and in accordance with our instructions. Third party processors include Microsoft Forms (used to collect information), Outlook and MS Teams (used to communicate with you) and Nexus 365 OneDriveforBusiness (used to store information).

Where we share your data with a third party, we will seek to share the minimum
amount necessary.

How will we keep your data safe?

All the information we collect will be kept secure and in confidence, and access to
information that could identify individuals and organisations will be on a need-to-know basis. Your data will only be accessible to the network team.

Any data or findings from the Parent Carer Research Networks activities that is
published will not identify individual researchers unless separate consent is
obtained.

We will only share your data with a third party where you have provided us
information and agreement (i.e. in a research opportunity advertisement to be put in our newsletter or on our website).

What is our lawful basis for processing your data?

Legitimate interest is the lawful basis for processing your data as outlined in the
Privacy Notice. Processing this data is in the researcher’s interest as it facilitates the engagement of researchers with parents and carers and aids in the completion of the research with minimal risk. The processing of the data also benefits parents and carers as they get the experience of taking part in research and receive benefits from the research and the network. We ask for confirmation that research opportunity leads agree to the terms and conditions of the Parent Carer Research Network.

If team members change, identifiable information can be updated in the Parent Carer Research Network records, however the original application form record will not be editable.

The research team has the right to remove their research activity from future involvement in the Parent Carer Research Network; the record will be deleted from the Parent Carer Research Network website, however the record of the research activity will be retained on file at the University of Oxford provided storage system Nexus 365 OneDriveforBusiness, and within email conversations on Outlook. We will also maintain a record of the removal of the partnership of your research activity with the Parent Carer Research Network in a restricted access folder on a University of Oxford provided storage system (Nexus 365 OneDriveforBusiness) for the length of the project. Note that it may not be possible to remove any previous advertisements about the research activity from published newsletters that are already in the public domain.

How long will we store your data?

We will store identifiable researcher information for 24 months after the end of the research activity data collection. At this stage, identifiable information will be
deleted.

Research activity data (with no individual researcher names or contact information) will be retained in a restricted access folder on a University of Oxford provided storage system (Nexus 365 OneDriveforBusiness) for three years after the final publication or public release after the conclusion of the network. At any time, you have the right to ask us what data we have, how we use it and, if you wish, to have identifiable information permanently deleted from our contact records on our databases by emailing parentcarerresearchnetwork@psych.ox.ac.uk.

Who is responsible for keeping your data safe?

The Parent Carer Research Network team will be the day-to-day handlers of your
data. They are based at the University of Oxford, University of Birmingham, and the Charlie Waller Trust. If you have any questions about how your data is being
collected, processed, or stored in the first instance please contact the team.

The University of Oxford is the data controller with respect to data we collect as part of network activities. Further information about your rights with respect to your personal data, and contact details should the Parent Carer Research Network team not be able to help, is available from the University’s Information Compliance website at https://compliance.admin.ox.ac.uk/individual-rights or by emailing data.protection@admin.ox.ac.uk.

Privacy policies on other websites and for advertised research activities

Our website and newsletters contain links to other websites and information
regarding research activities. Our privacy policy applies only to our website,
email/telephone communications, and newsletters.

This Privacy Notice was created on 28 March 2025 and will be reviewed once every 48 months.